Our mission

use MY data is a movement of patients, carers and relatives

use MY data supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes.

use MY data endeavours to highlight the many benefits that appropriate usage of healthcare data can make, to save lives and improve care for all.

use MY data aims to educate and harness the patient voice to understand aspirations and concerns around the use of data in healthcare delivery, in service improvement and in research, aimed at improving patient decision making, treatment and experience.

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GP Data for Planning and Research (GPDPR)

Our work to bring patient voices to the implementation plans for GPDPR

Your voices have been heard - changes have been made...!

 

On 1 July 2021, we wrote to NHS Digital suggesting a series of actions which we said should be undertaken to address concerns and to move the GPDPR programme forward. 

On 19 July 2021 , NHS Digital announced that the GPDPR has been paused.  We received notification by email from NHS Digital, which includes a letter from Jo Churchill, Health Minister for Primary Care and Health Promotion.  You can find the letter here.  The letter outlines four criteria that must be met, before the GPDPR can go ahead.  We have also written to Jo to support this decision.

This is very positive news and shows that the power of the patient voice can be harnessed through positive engagement to bring change. 

On 21 July 2021 we wrote to NHS Digital to thank them for their response and to support their decision and to offer to host a use MY data webinar on the GPDPR in September 2021.  We also highlighted areas where some of our actions still needed to be addressed, shown below. 

We received a reply letter from NHS Digital on 21 September 2021 (letter dated 16 September), responding to our original letter of 1 July 2021.  The Secretariat has written back to NHS Digital seeking answers to questions raised in our later letter of 21 July letter, which included a request for details of oversight groups for the GPDPR and patient/public involvement in these.  NHS Digital has indicated a willingness to run a patient-focused webinar with us and we have offered a slot for February next year.

On 07 October we received a reply via email from Mark Roberts, Programme Governance, GP Data, NHS Digital.

“Apologies for the delayed response to your letter on 21st July, but having reviewed that letter and our response to the 1st July letter, we trust that the vast majority of points made have already been addressed apart from the points you rightly call out regarding oversight groups. 

We are in the process of formalising these groups and confirming the formal terms of reference with the intention that they are fully up and running during the next two weeks. There will be two formal groups established to focus on the profession, and patient/public, viewpoints towards the implementation of GP Data for Planning and Research. These groups will be closely aligned and the expectation is they will review the same content each fortnight, however the separation is to ensure that both group’s voices are heard clearly. To ensure transparency, the terms of reference for each group as well as appropriate meeting input/output will be captured and published for full public visibility. Again the publication location is being confirmed and will be included in the terms of reference as they are finalised.

We would like to invite you to attend the patient/public engagement panel to continue to provide your valued input and challenge. The current time for this forum will be Thursdays between 9:30-11am. The next session is currently on Thursday 21st October [since changed to 28 October] and will be fortnightly thereafter. Please could you confirm who would be best to attend this forum, and we will arrange for the invite to be shared as well as a pre-meeting to discuss the planned group dynamics and how we can work together using this forum and in 1-1 sessions going forward.

We would also like to take you up on the offer to use the Webinar slot in February, and we will work with you to confirm the right content and focus for that session over the next few months.”

On 07 October, NHS Digital invited use MY data to “attend the patient/public engagement panel to continue to provide your valued input and challenge”. On 18 October, we met with NHS Digital to discuss the invitation and the panel. Please find below a summary of the discussion and our proposed next steps.

Meeting to discuss the GP Data Patient and Public Engagement and Communications Advisory Panel.

Attending for use MY data:

  • David Snelson, Advisory Group Member
  • Chris Carrigan, Expert Data Adviser
  • Emily Connearn, Events & Website Manager
  • Alison Stone, Coordinator.

Attending for NHS Digital:

  • Lorna Branton – Communications Lead for GPDPR (will be in post from 01 November)
  • Vicky Maskell – Communications & Engagement Working Group for GPDPR (on secondment from the Cabinet Office)
  • Mark Roberts – Programme Governance, GP data
  • Eva Simmonds – Programme Head, GP data
  • Susannah Strong, Senior Communications Manager (data).

A summary of the questions and answers.

What are the Terms of Reference (ToR) for the panel and when was the panel established?

  • NHS Digital sent the ToR for review (the ToR is marked as “not for distribution”).
  • The panel has developed from the GP Data for Planning and Research Editorial Review Panel, which
    was established in July.

Who are the current (and proposed) members of the panel, and by what route did they (will they) arrive? (i.e. if appointed, by whom and for how long - which may or may not clear from the ToR?)

  • Members are listed within the ToR, with the exception of patient members. This is at the request of the patient members, who asked for their names to be redacted.
  • Members arrived at the Editorial Review Panel by way of invitation, in the crisis stage of the initial reaction to the GPDPR.
  • The panel is a mix of patients and people who work in data. It was described as independent.
  • On the panel at present are Natalie Banner and Nicola Perrin, however they are both leaving the panel. As the current and previous Leads of Understanding Patient Data, they have a wealth of
    knowledge and a long perspective.
  • One patient is leaving, due to a change in work circumstances, so there is vacancy.
  • There is also a Check and Challenge Panel*, which runs alongside this one.

Does NHS Digital see the use MY data representative on the panel as a patient representative or organisational representative (or both)?

  • NHS Digital attendees were unsure about this, partly because they didn’t fully understand the set-up of use MY data and partly because they see our Members as more informed about data than the ‘average’ patient representative.
  • We explained the set-up of use MY data and that it is the Members. NHS Digital has left it to use MY data, to decide if a Member or Secretariat representative would be best on the panel.

May we see the previous minutes/notes from panel meetings, and where are they published/will they be published?

  • Meeting information – ToR, agenda, high level minutes, meeting papers - will be published, along with an update on the GPDPR programme. There was not a set date for this, but NHS Digital is getting close to publishing.
  • The meetings operate under Chatham House rules, so that attendees can feel free to speak, hence the publication of only high-level minutes.
  • The meetings will be fortnightly.
  • We highlighted that the ongoing lack of transparency and visibility around the GPDPR is damaging. And that it will be difficult to join the panel if the information about the panel is not publicly
    available. NHS Digital said that they hope to publish the information before the Panel meeting on 28 October.
  • Post-meeting NHS Digital said - “We aim to get the new web content published this week and will use that as a platform to build to a position of transparency. As discussed on the call there is a way to go here, but we are keen that we start out from the best possible position, hence the final checks that are taking place”.

What are the arrangements for expenses/honoraria for patient/public members of the panel?

  • Payment for representatives is currently being set up. Payment will be made for meeting time and preparation work outside of meetings. This will probably be on a ‘contractor’ basis.

*Check and Challenge Panel
Information obtained from NHS Digital after the meeting, when asking for membership information for the Check and Challenge Panel.

“The Check & Challenge membership is below and the ToR is out with these members for review ahead of ratification at the first session on the 27th October. The full ToR will be then published on the website and kept updated as required.

  • British Medical Association (BMA)
  • Royal College of General Practitioners (RCGP)
  • Office of the National Data Guardian (NDG)
  • Office for National Statistics (ONS)
  • Information Commissioners Office (ICO)
  • Nuffield Department for Primary Care Health Sciences (PHC)
  • Academy of Medical Royal Colleges (AoMRC)
  • Association of Medical Research Charities (AMRC)
  • National Institute for Health Research (NIHR)

As Susannah mentioned on the call, at this point the Patient & Public Panel will be fully aligned with the Check & Challenge group and they will review the same documentation from that point forward albeit with different lenses reflective of the membership and terms for each group. This is reflected in the new ToR issued for the Patient & Public Panel as it re-focusses on this revised purpose.”

Post meeting
The use MY data Advisory Group and Secretariat met on 20 October, and discussed the best way forward. The Advisory Group agreed that use MY data should take up the opportunity to join the group, with our initial focus being on the need for greater transparency. The Advisory Group suggested that the panel place would be best served by a rotating group of two/three Members, which would a) spread the time commitment required and b) ensure different patient perspectives are heard. They would work together as a team and ensure there is handover between them and preparation for the meetings.

We have proposed this to NHS Digital and are now awaiting their response (which we should have by the end of 22 October). 

 

The actions that we asked for

What the Government and NHS Digital have said as a result

NHS Digital to provide clearer information on the types of opt out available, and the effect of the different opt outs

NHS Digital have commited to start uploading data "only when there is an ability to delete data if patients choose to opt-out of sharing their GP data with NHS Digital, even if this is after their data has been uploaded." 

"We want to make the position around opt-out much simpler."

"We are introducing three changes to the opt-out system which mean that patients will be able to change their opt-out status at any time"

NHS Digital should publish the numbers and breakdown of Type-1 opt outs

Information on National Data Opt-out (Type 2) numbers are published by NHS Digital and available here - https://digital.nhs.uk/data-and-information/publications/statistical/national-data-opt-out

As yet, there is no information available about the number of Type-1 opt outs.

NHS Digital should extend the go-live date to allow time for the development and rollout of a formal communications strategy

In a letter to all GPs dated 19 July 2021, Parliamentary Under Secretary of State Jo Churchill set out a new process for commencing data collection, moving away from a previously fixed date of 1 September.  The letter is available here.

It states "I can confirm today that, while we are continuing to work on the infrastructure, and communication for the project, we are not setting a specific start date for the collection of data."

NHS Digital have commited to start uploading data "only when patients have been made more aware of the scheme through a campaign of engagement and communication."

 

NHS Digital should confirm that the access to the GPDPR data will be within a Trusted Research Environment. Any exceptions to this should be clearly highlighted, with the reasons published.

NHS Digital have commited to start uploading data only when a Trusted Research Environment has been developed and implemented in NHS Digital.

"The Government has committed that access to GP data will only be via a Trusted Research Environment (TRE) and never copied or shipped outside the NHS secure environment, except where individuals have consented to their data being accessed e.g. written consent for a research study."

NHS Digital to enhance the reporting of access requests to include requests which are refused

"We will also ensure that the NHS Digital Data Protection Impact Assessment (DPIA) reflecting these changes to the programme is published well before data collection commences"

"Once the data is collected, it will only be used for the purposes of improving health and care. Patient data is not for sale and will never be for sale."

We have not yet heard how the access-requests will be reviewed or how the decisions will be reported.

NHS Digital to publish, in a more accessible format, the benefits assessment undertaken when access to data is given to a commercial company We have not yet heard how benefit assessments will be reviewed or reported.

We see the communications plan as a critical piece of work.  NHS Digital should publish details about the plan

NHS Digital have said "We are developing a communications strategy delivered through four phases.

  • Listening - where we listen to stakeholders and gather views on how best to communicate with the profession, patients and the public and give them the opportunity to inform the development of the programme in areas such as opt-outs, trusted research environments and other significant areas
  • Consultation - a series of events where we can explain the programme, listen and capture feedback and co-design the information campaign
  • Demonstration - show how feedback is being used to develop the programme and shape communications to the healthcare system and the public
  • Delivery - of an information campaign to inform the healthcare system and the public about changes to how their GP data is used, that utilises the first three phases to ensure the campaign is accessible, has wide reach and is effective"

Whilst this is a good list of aspirations, we have not yet seen a detailed plan for how these aspirations will be delivered.

We believe it is essential to involve patients and the public in the design of the communications and the overall plan, and in its delivery.  We would like NHS Digital to take steps to include the patient voice as an equal in the development and rollout of the communications campaign

In their reply to our letter, NHS Digital say "we are in a position to begin a more proactive communications campaign and to discuss the contents of the letter externally. We look forward to further discussions with yourself and other colleagues."

"We commit to only begin the data collection once the TRE is in place. Further, we will ensure that the BMA, RCGP and the National Data Guardian have oversight of the proposed arrangements and are satisfied with them before data upload begins."

We have not yet heard how patients and the public will be involved.

 

 

The background to the GPDPR 

On 12 May 2021 NHS Digital, the national organisation which designs, develops and operates the national IT and data services for the NHS in England, announced the introduction of a new service, “which will more efficiently collect primary care data and make it available for better planning of healthcare services and for use in medical research.”

This new service, called General Practice Data for Planning & Research (GPDPR) was to collect data from all GP Practices in England into NHS Digital from 1 July 2021.  It extends the use of data beyond the pandemic response, where data was used for purposes such as identifying people who should have priority for vaccinations because of underlying health conditions.

NHS Digital made the following statement:

“NHS Digital is committed to complete transparency with patients and the public about the collection and use of health data. We will continue to publish detailed information about our data policies, protocols and systems and we will continue to publish details of all data we share via our data release register.”

Following feedback on its initial schedule, NHS Digital announced that "to provide more time to speak with patients, doctors, health charities and others, the collection of GP data for Planning and Research in England has been deferred from 1 July to 1 September 2021."

 

use MY data's position on the GPDPR

As a patient-led movement, use MY data supports what GPDPR is trying to achieve. We want to see our data used to improve patient care and outcomes. However, there needs to be much greater communication to patients and the public so that they understand more about benefits, risks and controls, so that they can make an informed choice and opt-out if they wish.  We must ensure that anybody wanting to use our data should focus on explaining these anticipated benefits in ways that are understandable and accessible for the public and for patients.

The NHS relies on effective planning and innovative research to develop and deliver its services, and to improve treatments and health results. We urge our NHS to highlight more often how and why this depends on our data, in particular using real-world examples showing how using our health data delivers benefits for all of us.

To make clear our position on the GPDPR, we drafted a Press Release and a Position Statement, adding these to our website. 

 

How we engaged with our Members and beyond

On 16 June 2021 we hosted an emergency webinar to bring a range of key stakeholders together to discuss the GPDPR.  This included patients, relatives and carers, to seek views from webinar delegates and take these to NHS Digital. 

In this webinar, we explored the circumstances around the proposed GP Data for Planning and Research (GPDPR).  In particular, we wanted to give patients, relatives and carers the opportunity to communicate directly with those in charge of the programme, and with a wider panel with different perspectives.  We wanted a dialogue about the GDPDR, to ensure there is a balanced debate about anticipated benefits versus potential risks.  The webinar was devised by patients to bring a patient voice to the discussions.

We heard about the development of the GPDPR, its aims and ambitions.  We then explored with delegates what needs to be done to make the GPDPR a success, in the interests of patients.

You can watch the webinar recording here.  We also asked delegates for any specific advice for NHS Digital on how to ensure that the GPDPR is a success, which we supplied to NHS Digital.

The webinar identified a set of key actions which formed the basis of our letter to NHS Digital, which went sent to them on 1 Jiuly 2021.

 

The actions which we requested NHS Digital to takeLetter to NHS Digital

Following our webinar we wrote directly to NHS Digital summarising the views of delegates from the webinar and suggesting a series of should be undertaken to address delegate's concerns and to move the programme forward.  We identified the five key themes, with suggested actions:

1. The mechanism of opt out is unclear to people and difficult in the current situation - we have seen over 100,000 new National Data Opt-outs in a month, despite these not being the route required to express a GPDPR opt out. We do not know the number of Type-1 opt outs made via GP practices.

use MY data believes that patients can only make an informed decision when clear, complete and comprehensible information is available to them, in an accessible form, including information about how to opt out and what this means, both for them as individuals but also the potential impact on research and on our NHS.  If patients opt out to the sharing of their data, this should be respected.

Action: NHS Digital to provide clearer information on the types of opt out available, and the effect of the different opt outs.
Action: NHS Digital should publish the numbers and breakdown of Type-1 opt outs.

2. The timing of the proposed 'go-live' date is too short. Effective communication with patients and the public is needed, so that they have enough time to make an informed choice.  Our 160 delegates on the webinar posted nearly 120 questions during the webinar, most of which we did not have time to answer

use MY data agrees with the decision taken by NHS Digital to delay the implementation of the GPDPR.  But the September 2021 deadline is still too short to ensure patients have enough time to consider their options and make an informed choice, and do not feel forced to opt out by August 2021.  Opt outs will continue to rise if people are not given the time to make an informed choice.

Action: NHS Digital should extend the go-live date to allow time for the development and rollout of a formal communications strategy.

3. The GPDPR data should be managed safely and transparently inside a Trusted Research Environment

We welcome the commitment made in the recent Adjournment Debate that the GPDPR data would be managed within a Trusted Research Environment.  use MY data believes that Trusted Research Environments should become the default mechanism to ensure patient data is managed and used safely, in a way which is auditable and transparent.  We are optimistic about their role in driving forward health research more rapidly and widely than other data access methods.  Our principles of transparency should be adopted.

Action: NHS Digital should confirm that the access to the GPDPR data will be within a Trusted Research Environment. Any exceptions to this should be clearly highlighted, with the reasons published.

4. Governance, safeguards and reporting should be clearly defined

use MY data believes that only approved users should be able to access the data.  The access approval process, and the role of patients in this process, should be clear and published, as should the results of any application, including whether they are approved once or for multiple access, whether successful or not.  The GPDPR data should be used only for approved purposes to benefit the public.  It should never be used for marketing or insurance purposes.  If a commercial company uses patient data, the NHS must benefit fairly from any revenues generated.

Action: NHS Digital to enhance the reporting of access requests to include requests which are refused.   
Action: NHS Digital to publish, in a more accessible format, the benefits assessment undertaken when access to data is given to a commercial company.

5. The proposed public campaign is welcomed, but more detail is needed about design, content, mechanisms and timing. The messaging about the GPDPR needs to be managed positively, not just left to the media

use MY data believes that a robust communications plan should be developed and delivered, involving patients throughout this process.  The benefits of uses of patient data for research and planning need to be emphasised.  We suggest that patient stories and patient spokespersons have a role to play in this.

A poll of the webinar delegates showed that by far the largest source of information available to delegates about the GPDPR had been from the media.  The commitment from NHS Digital to launch “a substantial campaign to publicise this activity” was welcomed, but the contents of that communication need to be clear and balanced. 

Action: We see the communications plan as a critical piece of work.  NHS Digital should publish details about the plan.    
Action: We believe it is essential to involve patients and the public in the design of the communications and the overall plan, and in its delivery.  We would like NHS Digital to take steps to include the patient voice as an equal in the development and rollout of the communications campaign.

 

Our letter was sent to NHS Digital on 1 July 2021.  A request for a response was sent to NHS Digital on 6 July 2021 and a further request for a response was sent on 13 July 2021.  On 19 July 2021 we received a reply from NHS Digital.

 

The NHS Digital reply to our letter 

"Apologies for the delayed response. Following the change in Health Secretary’s there has been a period of internal discussion ( including talks with the BMA and RCGP) to discuss the way forward for GP data, taking on board the many comments that have been made, including the ones you sent following the seminar. One of the first results of these discussions has been a letter from Jo Churchill to all GPs that was sent today and is available here."

https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/secretary-of-state-letter-to-general-practice

"Now that this has been released we are in a position to begin a more proactive communications campaign and to discuss the contents of the letter externally. We look forward to further discussions with yourself and other colleagues."

"Apologies again for the delayed response but hopefully you will understand."

 

Health and Social Care Committee Inquiry 

On 20 July 2021 the Health and Social Care Committee undertook an Inquiry into the GPDPR, with the following scope:

“The Health and Social Care Committee will today examine the implications of the Government’s new General Practice Data Planning and Research programme (GPDPR). The session will explore the benefits to medical research and improvements to NHS planning that could be achieved by the Government’s plan to implement a programme of ongoing extraction of GP patient data.  The Committee will consider the risks associated with extracting data on this scale such as concerns that confidential health data could be used by marketing or insurance companies and that individual patients may be identifiable despite processes which are intended to prevent this from happening.  The hearing will also examine the extent to which patients understand how their data is used by the NHS, the strength of the opt-out options available to patients, and parallels with the care.data scheme which was closed in 2016.”     

We sent supporting information from use MY data to the Committee’s clerks:

  • use MY data’s letter to NHS Digital, which followed up on essential actions identified at our 16 June GPDPR webinar.  Chris provided information to the clerks about the webinar, our follow-up work and that we are still awaiting a response to the letter.
  • use MY data’s letter to NHSX, NHS England & Improvement, following our 20 September webinar on COVID-19 and patient data.  use MY data formally requested an Access and Release Register for the NHS COVID-19 Data Store.  Chris provided information to the clerks about the webinar, our follow-up work and that the Register has yet to be published.  He highlighted that while this may appear unrelated to the GPDPR, it demonstrates that commitments to transparency need to be backed with actions and, without that, there is an erosion of public trust.

Full details about the Inquiry, including witnesses and how to listen, are available here.

 

 

For reference: NHS Digital website links,

https://digital.nhs.uk/news-and-events/latest-news/improved-collection-of-gp-data-launched

https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/advice-for-the-public 

 

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